I was once told a family story about one of my great-great aunts, let’s call her Clara. As a young adult, Clara was diagnosed with Lou Gehrig’s disease, or as it was known in those days “turning to stone.” Before Lou Gehrig made it noteworthy, the disease that bears his name was named after its most noticeable symptoms, a progressive atrophy of motor neurons until a person can’t even move at all. They feel like they’ve “turned to stone,” and death follows when the neurons controlling the heart or lungs also atrophy away.

Clara’s doctor told her sister about the diagnosis, but the sister was *adamant* that Clara not be told. “Turning to stone” was a horrific way to go, and conjured ideas of a person being trapped in their own body unable to move or call for help until at last they slowly, agonizingly, died. Clara was never told her diagnosis, and continued to see her doctor while being told lies that she was “improving” and “getting better.” Until at last she died.

And with the fullness of time, I guess she really will “turn to stone,” as will we all.

I don’t know what Clara thought as she was dying. Maybe she never really knew what was happening to her, or maybe she figured it out. Either way, her family probably thought they were doing her a favor by not telling her, and saving her the pain of knowing her inescapable fate.

But were they really saving her? Or did she pass away sad and frustrated that despite her efforts and all the encouragement, she only ever got worse and worse? Maybe knowing would have given her peace of mind, and made it easier for her to understand her condition.

Stories like Clara were common a century ago. It was not uncommon for doctors to hide a diagnosis from a patient, on the assumption that it was better they simply not know. Fortunately now we’re past that, and doctors are willing to treat patients with a lot more respect. Sometimes.

Recently I switched doctors and have been trying to continue taking the medicine I had been prescribed by my old doctor. My condition isn’t immediately life-threatening, but my live is much improved with the medicine. However I have had an absolutely terrible time of it, and have seen first hand how stupid the medical system can be when doctors get it into their heads that the patient is best kept in the dark.

The first thing that happened was that the doctors, with too little information in hand, misdiagnosed me and tried to brush brush off my condition. The medicine I’m taking has some slight psychoactive properties for some (although not for me) and is occasionally used to treat depression or insomnia. I have neither, and I wasn’t taking it for either.

I listed both my condition and the medicine I had been prescribed, and the doctor agreed to set up an appointment with me. But when I arrived for the appointment, the nurse did nothing more than take my weight before telling me that I was in the wrong place, *that* medicine is proscribed by psychiatric care, and I needed to get an appointment with an entirely different department. I made the appointment, but had no idea why I was even doing so.

The medicine isn’t psychiatric, nor is the condition. But because it has alternative affects, someone got it in their stupid thick skull that this was *only* a psychiatric medicine and that I couldn’t possibly be taking it for the *non-psychiatric* reason that I had put in the mandatory intake form. It’s clear neither doctors nor nurses ever read a damn word of the forms they ask you to fill out, because even glancing at mine would have told them what my condition *really* is. And if they *did* think I needed to visit psychiatric, then *they should have told me so before the damn appointment*. They should have realized “oh, this person is in the wrong place” and told me before they wasted my time!

As I said I scheduled the appointment with psychiatric, but after an angry phone call with the original doctor’s office, someone actually realized their mistake and got me a new appointment with someone who could treat my condition.

*Could* though, not *will*. Because see, my condition can also sometimes be treated with lifestyle changes, but I’ve worked on it for years with no luck before I got the medicine, and the medicine is the *only* thing that helped me. But the doctor I spoke to decided to treat me like someone who had never heard of their own condition, the condition *I had to tell these people about*, and started off with the whole lifestyle spiel before I had to cut them off and list off everything I’ve tried before medicine actually getting some help with medicine.

The doctor also decided that I had so *little* understanding of my condition that she had to list all the signs and symptoms, all the ways it will affect my health, even though *I already know all this, which is why I’m here for some god damned treatment*. These people were too stupid to read a form, and now are too stupid to listen to me and understand that I have had this for a while, I know what it’s all about, and I know I both need and want medicine to contain it.

They treated my like a child, quite frankly. They assumed that I was completely lacking in knowledge, that I didn’t know what I needed or wanted, and that I had zero understanding of my own health. I got a prescription but I’ve decided after filling it that I’m unlikely to ever visit this practice again, because for all the horrors of the healthcare system, infantalization of the patient is one thing that should have stayed in the 19th century.